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Month: October 2016

The representation of disability on tv often leaves much to the imagination. Disabled people are often figures of pity. Their disability is centre stage, not them as individuals. In Scorpion, for example, the main protagonist’s sister had MS. She seemed to be okay – then she was in hospital and she died! Imagine if you’d just been diagnosed – gulp! Okay, you know it’s a tv show, but surely they must have checked it out? Surely they wouldn’t get it that wrong?!?
Last night I was watching Blue Bloods. Two of the cops were on crowd control while a tv cop show was being filmed. They were talking to the on-set advisor to complain about some of the procedures they had seen, and they were told “it’s not a documentary”. It made me think. No – it’s not a documentary. More people watch it than a documentary, so perhaps there is more responsibility to get it right?

That brings me to Speechless, the new sitcom on ABC. It revolves around the DiMeo family, and JJ, the eldest son, a teenager, has cerebral palsy. He’s in a wheelchair and can’t speak. He uses an AAC device – a word and letter board with a light pointer. And… wait for it… 3 episodes in and I think it’s doing a great job!

Sure there are issues. JJ communicates at a really rapid pace – he barely points at words and they’re spelled out for the person reading it. In reality, using any AAC device is a very slow process, but I’m willing to cut them some slack – it’s a 30 minute comedy show.

I want to concentrate on the issues raised in last week’s episode – its third episode:

Letting go: JJ has negotiated a whole day away from his mum, with his care aide. Her concern for his wellbeing shows a common concern for carers – how do you let go, knowing all the times that you have had to step in and help? I have a friend who has just been through that with her teenage son going out with his friends on his own for the first time. I experience that with Ian regularly – I tell him I can do something independently that on other days I have failed to do. I tell him to channel his inner Elsa and “Let It GO”! Obviously, the concern is real, and the costs of failure can be high, but, as disabled people, we need to have the independence to try.

Inspiration porn: When JJ and his carer, a black man called Kenneth, line up to buy a hot dog, everyone allows them to go first, saying that they are an inspiration. At first, this is great fun for them to see how far they can push it, ending up at a Dodger’s baseball game, but after awhile, Kenneth pulls away from JJ to enjoy the events for himself, and JJ feels the frustration of being taken for granted. Sure, I’ve happily gone to the front of the line – lining up for the cruise ship in LA, in temperatures of over 30C would have made it a medical emergency if we hadn’t been taken to the front – but being pawed by strangers in public who want to tell you that you’re an inspiration, or hearing “Good for you!” when you tell people of something you’ve done that wouldn’t get the same mention for a non-disabled person is tiring and can be demeaning. If you’re still uncertain of what I mean, watch Stella Young tell you all about it.

Caregiver guilt: JJ’s family go out to do something they can’t do with him – they go paint balling! At the end of the session, the daughter shouts “this is the best day ever!” and they all stop having fun as they realize it’s only because JJ isn’t with them. Again, my response returns to Elsa “Let It Goooooo!” It’s healthy! I need time apart from Ian just as much as he needs time away from me! Luckily, I now have my CSIL funding, so I have respite built in to my week. I find it interesting that it’s always thought of as respite for the carer – but we, the disabled people, need respite from the carer too!

Losing your voice: JJ’s carer left behind his AAC device – his word board. He told Kenneth that he had taken away his voice. While this was a very physical representation of it, disabled people lose their voice in many ways, from JJ’s example, to people finishing our sentences for us, to the structures in society that prefer that non-disabled people speak for disabled people. I have been dealing with this with the City of Kelowna and its Community For All Ages project which has no disabled people on the main committees. We must continue to demand that there is “nothing about us, without us.”

Ian and I laugh at so many of the situations in Speechless, as they are so similar to those we have been in, as a disabled person and a carer. And there is so much about our life that we laugh at, in ways that others might find irreverent or not politically correct. I asked a disabled friend, do you think non-disabled people find Speechless as funny as we do? Perhaps they do, but for different reasons. I’m going to keep watching, and I’m going to know that the jokes, for once, are for us.